Life in the Immediate Aftermath of Cancer

Life in the Immediate Aftermath of Cancer

Mental Side Effects

I can't explain this phenomenon. For 7 months you see doctors and nurses daily. Everyone knows you by first name. You feel like you belong. The "no exceptions ID policy" at the hospital check in no longer applies to you because everyone knows you and looks forward to seeing you at 10:45 every day. Cancer and cancer treatment invites you into a community of acceptance and love, without the mushy gushy kissing and hugging and crying that you might get at home. Even though you feel like crap, you feel GOOD to be a part of this community. You share gossip daily with your chemo nurses and then again with the radiation nurses. You make friends with the others who also receive chemo on Thursday mornings. You make friends with their family members who come sit with them. And then one day, quite unceremoniously, they tell you "you are done - go back to your life now".

You are not quite cut off so cold turkey, you will have to see your doctors every month or at least every three months for a while, and then at least once a year for the rest of your life. But just like that, your supportive cancer community is gone.

I was not sad right away. I tried to make the unceremonious into something ceremonious by posting "last day of chemo"selfies on Facebook and going out to dinner on the last day of radiation. Of course

Last Day of Chemo Facebook pic

my disability ran out so I went back to work a week before radiation ended. Once the last day of radiation ended, I was exhausted from a full week back at work. But now what? For months and months my primary goal every day was survival. I listened to other people on Facebook and in the office complain about politics and romance problems and I laughed inside because it all seemed trivial if you might not live to see tomorrow. I never thought that my cancer had progressed enough that I could die at any time, but as sick as I was after surgery, and after my first few chemo treatments, I was ready to take death over treatment. I thought treatment may well kill me. Now all of a sudden I was supposed to just assimilate back into the world obsessed with retail therapy, dieting, and what the Kardashians are doing? As soon as I returned to work full time, the first emotion I had was that I didn't belong here. They laughed about things I didn't see humor in. They found entertainment where I didn't. I had fun drinking with them. Everything is fun when you have had 6 or 7 wines!

Wine Tour with VoIP Supply buddies

But a job I was previously very happy with didn't seem so crucial to me when an acquaintance from a few years back offered me a new position. A new position, new outlook, work from home, less people to deal with every day.... sounded right up my alley. Also at this point, after the 'excitement' of treating cancer for 9 months, the monotony of regular life was really getting me down. I was looking for something different and new. Possibly a change of scenery, a move out of state. This new position offered me that opportunity. Right then seemed like the perfect time to see what I could do with it.

So 2 months after my very last radiation treatment, I embarked into a sales/product management position handling the Panasonic brand line for a company HQ'd in Florida. The new job started with 2 weeks of onsite training, meaning onsite in Fort Lauderdale, FL. I think that change up saved my life, or at least my sanity. The depression was building that had resulted from going from constant excitement and change and a full schedule of appointments and treatments every day to returning to a daily regimen of 7am in, noon for lunch, 4pm out, make dinner, cheer/football practice, go to bed, repeat - day in and day out.  I was out of work for 3 months and when I returned the same issues were still going on - like they just sat there and waited for me to come back and address them. I needed change and excitement. A new career with HQ in Fort Lauderdale gave me just that. And my dad's girlfriend Cathy was kind enough to come stay with me for the weekend while I was down there!

Me and Cathy (part 1 of the Entertainment Entourage) in Fort Lauderdale

Health Side Effects

Lymphedema

All along, I was aware that my mastectomy, reconstruction attempts, and the following radiation could put me at risk for a condition called lymphedema in my arms. Part of the mastectomy was that they doctors removed lymph nodes in my armpit and then my arm to check for spread of the cancer. On my right side, the sentinel lymph node under my arm pit had a lot of cancer, so the doctors took an additional 17 lymph nodes from my right arm. On left side, they only had to take 3 lymph nodes. This put me at something like a 10% chance of lymphedema as I mentioned before. Lymphedema is when for any reason, the white blood cells fill your arm or hand, you are missing the lymphatic system to drain those white blood cells out of your arm, causing an unsual and long term swelling. It was a small chance that I would succumb to Lymphedema, but if I did, it would be a permanent condition. The chances were slightly increased by my choice to do radiation.



Can you guess which hand has Lymphedema?

So OF COURSE one time in February, five months after I was cured of cancer, someone asked me how I was feeling. Without thinking of that terrible Murphy's Law that follows me around, I answered how awesome I felt, how it felt like I never had cancer, how I recovered beautifully and had no long term side effects (besides not having any boobs) and how it really wasn't that bad. At that moment 'Murphy' put his palm to his face and decided to take his wrath out on me. At the beginning of March, my right hand started to hurt. I thought it was from the long hours I was putting into work and the extra typing I had been doing with a new task that was recently added to my job. I thought maybe carpal tunnel was returning. By the second week of March, my right hand was quite swollen. Enough that you could tell without having to measure. Then on March 17th I had to fly to Florida. By the time I got there, my fingers looked like sausages... it was all downhill from there. I officially had Lymphedema and that would occupy my worry and my time for half of 2014. It also took away my speed demon typing skills. That made me sad. My physical therapist had me wrapping my arm from finger tips to shoulder to compress the swelling out of my arm. She told me to keep the arm wrapped 23 hours a day, every day, for at least the next 6 months.

Arm Wrapped for Lymphedema after day 1 of physical therapy 4/24/14
 



 

Bone Pain

In mid April, I had gone to a beer bash for my daughter's travel softball team. A new extra curricular activity for her this year which quickly became her only reason for living. It used to be that Sarah's heart belonged to dance, and then cheer, and then softball, and then boys, and then saxophone. Now a days, her heart belonged only to softball. And unlike the other things she 'loved to do' where I had to constantly remind her to practice, I had to yell at her to STOP practicing softball.  Hours a day she spent by herself in my yard using the side of my house as a target. So I was really getting to know and like the parents of the other girls on her softball team when the beer bash came up. So it was no surprise that I stayed until they kicked us out, drank enough to get my $25 worth of beer, and danced every song that Hit N Run played that night.... and then went out to another bar for more fun! I wasn't drunk, but I was feeling good enough to DANCE - something I hadn't done since maybe the early 2000's. So I guess I shouldn't have been surprised when the next day my left hip was really hurting me. It hurt to go up stairs, it hurt to go downstairs, and it hurt to pivot my left leg, for instance, to turn and get myself out of the car.

But I am 38 years old. Anyone who is getting old would hurt after drinking and dancing all night. What was different is that I hurt from April 13th until July. It never got better. Some days were worse than others, but it wouldn't heal, and I didn't know why. My doctors didn't know why.

Then at the end of May, after a moderate day of walking at one of Sarah's softball tournaments, my left calf started hurting. The same side as my hurt hip. I am no stranger to the gym. Muscles get pulled, muscles hurt. You get over it. But my calf muscle started hurting on May 31st. As of June 13th it was just as sore and once again not healing. No doctor could tell me why this was happening. They did bone density scans and good news! I am fine! They did Doppler tests looking for blood clots in my legs, and I got more good news - I am fine! I went to two massage therapists. Around mid-June I also began getting acute pain in my right shoulder blade in my back. I never even called my oncologist about this, I just saw the massage therapist. She found no knots, no tears, no heat, no lumps or any other signs that there was muscle or tendon damage. She asked me to see a Rheumatologist because she thought she was hurting more than helping me. I was really feeling like a 78 year old woman the way my body was falling apart and aching over the silliest things. It was scary and embarrassing. What made it worse was that the best medical doctors I had ever had could find nothing wrong with me. That made everyone around me think that I was making up the pain. Besides, if there is nothing wrong, you must be making it up, right?  Do you know how hard it is to get up and go about your life every day in pain all over your body and have nobody believe you?

Finally in late June I called my oncologist and said regardless of what all the xrays and tests show, I know there is something wrong. It may not be a normal side effect, but maybe bone pain is a side effect of the Tamoxifen that I have been on since the end of September?  Dr. Dougherty's office said that bone pain is such a rare side effect that they didn't even consider it. That's all I needed to hear! OF COURSE that's what it is! Any weird or rare effect is going to happen to me! Have you met me? Knowing that I was scheduled for breast reconstruction on July 9th, Dr. Dougherty told me to stop taking the Tamoxifen until that surgery. If my pain got better - then we know. If not, I get back on it and we keep looking. Unfortunately, after a week of being off Tamoxifen, my hip and my calve got better. My shoulder blade got better last. The day before my surgery, I felt great! I even took the kids to Darien Lake and rode all the roller coasters myself! Things were looking up!

But I NEED to be on Tamoxifen. It blocks Estrogen from my body, and Estrogen is what caused my cancer. After my reconstruction, I will need to go visit Dougherty to see what alternatives there are to Tamoxifen. But finally I know WHY I was in pain. Apparently that's most of the battle!

So now on to the next event - breast reconstruction!